Please help evaluate the Chalder Fatigue Scale

[Graham]

I would like to collect together some data to help me analyse the reality of the Chalder scale in ME/CFS. You may have seen the blog at meanalysis.blogspot.com : now we are taking the work much further. In theory it is possible for someone who is mildly affected but in many areas to achieve a worse score than someone who is severely affected in just a few areas: I need to see if this happens in reality.

Would you be willing to send me your own assessment? I would like you to tell me whether you are mild, moderate or severe, then give me the 11 scores for each of the Chalder questions as you are today. Then think back over the year and give me the scores again for any bad patch that you went through that lasted more than a week, and again for any good patch lasting more than a week. I have put my scores at the bottom of this as an example of how I would like you to set it out. I'd prefer it if you sent it directly to me (graham.mcphee@gmail.com) if that suits you, rather than through a private message - that may fill up too quickly (he says optimistically).

I will contact you when the analysis is finished, but don't hold your breath - it is complex, and my brainpower is erratic.

Thank you in advance for your help.



Mild is defined as being able to lead a reasonably normal life, moderate is defined as not being able to work, and being able to do less than 50% of what you could do before you became ill. Severe is defined as being able to do less than 25% of what you could do before you became ill, and being dependent on other people for activities such as cooking and shopping.



Chalder Fatigue Scale - contains 11 questions

Do you have problems with tiredness?
Do you need to rest more?
Do you feel sleepy or drowsy?
Do you lack energy?
Do you have trouble starting things?
Do your muscles have less strength?
Do you feel weak?
Do you have difficulty concentrating
Do you find it more difficult to find the correct word?
Do you make slips of the tongue when speaking?
How is your memory?

and asks if the factor is less than usual in strength (0 pts)/ no more than usual (1 pt)/ more than usual (2 pts) / much more than usual (3 pts), where "usual" refers back to how you felt when you were healthy: if you can't remember that far back, compare yourself with healthy associates. It isn't easy to complete: don't worry if you find some parts too vague.

My Score:
Graham - moderate - today 2,2,2,3,1,1,1,2,2,2,3 bad 3,3,3,3,2,1,1,2,3,2,3 good 2,2,2,3,1,1,1,2,2,2,3 (yes, I'm on a good patch at the moment).

 

[Bob]

Great work Graham.

Just to summarise what you want, to make sure I've got it right...

Present scores
You'd like our present scores, and whether we are mildly, moderately or severely affected.
Bad patch
Then you'd like our scores for when we went through a bad patch, within the last year only.
Good patch
And you also want our scores for when we were in a good patch, within the last year.

(And would you like to know if our good and bad patches were mild, moderate, or severe episodes?)


And we should score each question with the following answers:

less than usual = 0 pts
no more than usual = 1 pt
more than usual = 2 pts
much more than usual = 3 pts​

Where "usual" refers to how we felt when we were healthy.


Mildly affected is defined as being able to lead a reasonably normal life.
Moderately affected is defined as not being able to work, and being able to do less than 50% of what you could do before you became ill.
Severely affected is defined as being able to do less than 25% of what you could do before you became ill, and being dependent on other people for activities such as cooking and shopping.


Is that all correct?

 

[Graham]

Spot on Bob! I don't particularly need to know whether your good and bad patches would be classed as mild, moderate or severe rating. I am looking at two different things. One is whether there is any match at all between the present ratings and scores, and the other to look at how much variation there is from that level over a year.

I have a couple of good ideas for how to put it together graphically - but whether they stand up to the test of real data is yet to be seen.

 

[Esther12]

It's hard to say for 'slips of the tongue' and 'memory' - I'm not drinking any more, and that was the primary cause back when I was healthy. I still don't really have a problem with these things, but somewhat more so than in the past (I am also older!)


Do you have problems with tiredness? present 3 bad:3 good: 3
Do you need to rest more? present 3 bad:3 good:3
Do you feel sleepy or drowsy? present 2 bad:3 good: 1
Do you lack energy? present 3 bad:3 good:3
Do you have trouble starting things? present 1 bad:? not sure. 3? good:1
Do your muscles have less strength? present 2 bad:3 good:2
Do you feel weak? present 2 bad:3 good:2
Do you have difficulty concentrating present 2 bad:2 good: 2
Do you find it more difficult to find the correct word? present 2 bad:2 good: 2
Do you make slips of the tongue when speaking? present2 bad:2 good: 2
How is your memory? present 2 bad:2 good: 2


I felt dirty filling that in. It's more a measure of how you remember being in the past - as if believing you used to feel worse is the same as improving. The more than usual/much more than usual division seemed really arbitrary too. Bimodal scoring would be much less open to misinterpretation.

A lot of my changes for 'bad' were because of migraine symptoms.

I'm not sure how ill I am (bad moderate?). Largely housebound, but doing my share of work about the house, and able to get out briefly for shops (or more if we invest in takeaway/ready meals so no cooking is needed). Also able to do some gentle pilates/deliberate activity stuff.

Thanks for looking in to this Graham.

edit -sorry for the poor formatting. It changes when I posted it.

redone

33231222222 : normal
33333332222 : bad
33131222222 : good

 

[Bob]

One is whether there is any match at all between the present ratings and scores, and the other to look at how much variation there is from that level over a year.

Hi Graham,
Oh, I hadn't noticed that you mentioned a 'year' in the first post.
So we are only supposed to think about our good and bad patches over the past year, and not ever since we became ill, is that right?
Bob

 

[Graham]

Yes, but in fact thinking beyond yesterday is a bit of a struggle for me, so do what you can. Really I am looking for a measure of the variability of your illness over the year - the sort of time scale that the PACE trial lasted. I know it is hard to decide on these ratings, but do what you can - that's all the patients on the trial could do!

 

[taniaaust1]

You'll probably find my variations interesting as by what you said.. Im in the severe catagory (do far less then 25% of what I did when I was well) but can actually score very well at times hence most scales can appear rather deceptive in my own case. It all depends on how much Ive done as Im affected post exertionally eg If I havent been doing basically much at all, I dont feel tired at all, I dont "feel" then like Im lacking energy etc etc. My condition very rapidly and severely declines over if I choose to do anything much.

Today is 0, 0, 0, 0, 2, 0, 0, 2, 2, 2, 0 (score of 8) .. with a bad period (or if I do more) I score all 3s throughout.
A good period for me is 0,0,0,0,0,0,0,2,0,0,1 (score of 3) (This is due to my concentration issues are always present and memory issue always present to some degree but in all other areas I can "feel" completely good at times.. it all depends on how much Ive done that day and on the previous days).

Or maybe you'd score me a bit higher as I was confused at something.. eg the "do you need to rest more?" I said no on a good day so scored question zero, basing it on if my body felt like I needed to rest .. thing is I do enforced resting eg practice like agressive bed rest and try to rest before I actually feel I need to do so (so hence avoid symptoms) ... so Im resting yet not feeling like I need to do so .. so I didnt know how to rate that question.
(I couldnt possibly go a day without laying down, I do lay down several periods a day.. but I can feel like well by planning ahead and doing the things I would need to do eg rest, before I need to do them). I feel well and healthy if I dont do things which cause my health to fall eg dont do any normal life activities.

(my average day consists of getting out of bed at lunchtime.. sitting about and cooking 2-3 meals per day (but not always can I do that) but not doing any housework, not dressing, not showering, not doing my hair etc etc.. everything i do or dont do has a goal of trying to conserve my energy to avoid getting any symptoms .. so ratings rating symptoms gives my condition a false sense that Im actually well). I can avoid nearly all symptoms for weeks at times (except the concentration and memory issues) by doing nothing.

* Note.. my condition has been actually fairly stable at the level Im at for past year or two.. but as I said its all based on how much activity I do.

 

[ukxmrv]

Something along the lines of

Present 3, 3, 2, 3, 2, 3, 3, 2, 2, 2, 2

Bad 3, 3, 3, 3, 2, 3, 3, 2, 3, 2, 3

Good 3, 3, 2, 3, 1, 3, 3, 1, 2, 2, 2

 

[Graham]

Thanks ukxmrv - would you describe yourself as mild, moderate or severe (as far as the woolly definitions above go)? I know there are better ones, but this is the set I am investigating.

 

[maddietod]

Does it help to know that some of us have almost no variability? My severity is low moderate. When I was healthy, of course I rate everything at a zero - so that confused me! Now everything is a 3, because I have all of these issues, and compared to being healthy, they're terrible.

Madie

 

[ukxmrv]

I am moderate to severe Graham. It varies. Probably choose moderate if pinned down to one.

 

[Graham]

Thanks ukxmrv and madietodd. The more you try to answer these, the woollier they feel.

I have completed an Excel form if anyone prefers that. How would I make it available for people?

 

[Graham]

Well I am up to 6 sets of data: any suggestions of how to boost the number of responses? How about a competition, with first prize a week's holiday with a psychiatrist of your choice?

I know I made the instructions too complicated!

 

[Snow Leopard]

I still find the scoring method weird:

less than usual = 0 pts
no more than usual = 1 pt
more than usual = 2 pts
much more than usual = 3 pts

Anyway, I gave up trying to train rats to understand this and settled with a visual analogue scale. :tongue:

Seriously though, Dr Jason had a few good papers which reviewed the fatigue scales and detailed the development of a new one, but I don't have the links on hand right now.

 

[Graham]

The trouble is that I can't find the data I need. I want to explore how real the problem is of hidden ceilings, and unless I have the data of both bimodal and Likert scoring for each patient, I can't do it. If people are clustered towards each ceiling (and there could be 8 of them), then random changes (good patches, bad patches) would force the average to improve. It also seems to be pretty relevant to look at the correlation (if any) between the rough and ready mild/moderate/severe and the number of 3 scores - again, I can't do that without individual data.

I do have the bimodal/Likert data from the Goudsmit study, but that was only 24 patients, and that has a weird distribution, which makes me wonder about the use of 3 as a score rather than the total score being relevant to severity.

Ah well, can but hope!

 

[Nielk]

Graham,
I am considering myself as severe.
I am at my worst now, so my first number represents now and my second number represents when I was feeling better this past year.
Hope this helps.

Chalder Fatigue Scale - contains 11 questions

Do you have problems with tiredness? 3 2
Do you need to rest more? 3 2
Do you feel sleepy or drowsy? 2 2
Do you lack energy? 3 2
Do you have trouble starting things? 3 2
Do your muscles have less strength? 3 2
Do you feel weak? 3 2
Do you have difficulty concentrating 2 2
Do you find it more difficult to find the correct word? 3 2
Do you make slips of the tongue when speaking? 3 2
How is your memory? 2 1

and asks if the factor is less than usual in strength (0 pts)/ no more than usual (1 pt)/ more than usual (2 pts) / much more than usual (3 pts), where "usual" refers back to how you felt when you were healthy: if you can't remember that far back, compare yourself with healthy associates. It isn't easy to complete: don't worry if you find some parts too vague.

 

[Graham]

Thanks Nielk - you are number 13 on the list.

 

[Graham]

Up to number 23 on the list, and already a couple of interesting things are cropping up. The natural variation between good and bad patches is averaging out at over 3 points, but with more data I can study whether hidden ceilings are affecting this. Also the correlation between mild, moderate and severe is not that good - the overlap is quite extensive (although I don't have many mild entries). I get the feeling that the Chalder scale is better at measuring changes than measuring actual "fatigue".

 

[Sparrow]

Now: 3, 3, 2, 3, 3, 3, 3, 3, 2, 2, 2
Good: 2, 2, 1, 2, 3, 2, 2, 2, 1, 1, 1
Bad: 3, 3, 2, 3, 3, 3, 3, 3, 3, 3, 3

Was moderate to severe in the good patch (moderate if I really had to pick one, I guess), and am now quite severe. The good bits were from before I really crashed out fully, though. The best I've been since the recent crash would be different from those numbers.

 

[Graham]

Thanks for that Sparrow - you are number 37 on the list! I'll let you know when it is all ready to view.

You have had ME for the least amount of time for my sample so far, and have the equal worst set of variations between good and bad! I think, from this data, that the variations settle down over time - perhaps it is as we get more used to balancing our activities. The more I look at this data, the more questions come up!

I hope you get back on a better patch soon.